Leading into my last round of DA-R-EPOCH last October I realized how “free” I was really going to be. And by free, I mean I was simultaneously feeling release and excitement along with being terrified, out of control, and lost. Since that June and my initial diagnosis, everything had been monitored very closely. I had at least two blood draws a week giving me precise numbers to track, and I had pretty explicit instructions of what I needed to do and take every single day.
To prepare for life after chemo I created a list of questions to help me prepare to continue “without them” once I walked out the door after chemo. I wouldn’t see anyone, even at the clinic for blood draws, for MONTHS until my PET in January – these people who I never went more than 4 days without seeing for 5 months straight. Sure I could come in or reach out whenever was necessary, but I really was days away from being free from the monitoring and the built in bumpers that were set up for me during treatment.
Realizing I had so many questions to ask my care team about how I was supposed to take care of myself I started to put them down on paper. I organized them by topic and sent it over to my PA and Doc before seeing them prior to round 6 so they could be prepared with all of the answers and we could make good use of our appointment. You can take the auditor out of the conference room, but you can’t take the conference room out of the auditor! Or something like that….
My team took care of covering every question with me. They’d printed out the list and appreciated it so much that they said they’d use it going forward as they help other patients feel prepared. I’m going to take that one step farther and share the list of questions here to put the resource out there! I feel like it is a great tool so why not! I don’t think it’s PMBCL-specific, limited to discussing only at the end of treatment, or even cancer-specific, so hopefully others can use or even add to what is below. I’ve done some altering to make it more widely applicable, but there are some topics (e.g. ports) that I am not familiar with. Let me know if there are any others I can add!
(Note that this list is on top of months of learning and discussions that I had with my care team. It is not all-inclusive of what one needs to know in order to function post-treatment. I have also not included the responses that I received as I am no medical professional and they are personalized for my situation. You should always ask your care team about your own facts and circumstances)
SYMPTOMS: Can we recap what I should be on the lookout for after I leave the hospital? Temperature, pains, etc? Is there anything I should expect that is different from the other chemo rounds?
BLOOD CLOTS: What do I need to consider going forward? Immediately and long term? Pregnancy?
FOOD: When is it ok to eat sushi, soft cheeses, rare steak, salads? When is it ok to take multivitamin, biotin, tylenol, and supplements? Is there anything to avoid?
BRAIN TUMOR RISK: Another PMBCL patient brought up the topic of Methotrexate as a prophylactic for risk of brain metastasis. Was this considered with my treatment? What are the risks of this cancer showing up somewhere else?
PICC: When can my PICC be removed? Are you sure it is ok to remove the PICC when future labs may be needed? Is there physical therapy-type measures for rehabbing my arms/shoulders? When can I submerge my arm? Go in a bath/pool?
WORK TRANSITION: When should I plan my return from work? Work gets very busy in Jan for my field, what kind of adjustments should I consider making or requesting? What hours are ok? Is there a kind of part-time situation that should be considered?
FUTURE APPOINTMENTS: When will my PET be? When are my next labs being taken after I leave chemo? What are the follow up appointments going forward?
EXERCISE: How and when should I start to get back into the swing of things? Any requirements? Anything I should avoid? Yoga, jumping, pilates, kickboxing?
OTHER DOCTORS: When is it ok to see other doctors? Optometrist, Dentist, GP, Gyno, Dermatologist? Any GP recommendations what might have experience with lymphoma patients? When can I get a flu shot – any precautions? (to my surprise they actually gave me a shot immediately following this discussion – apparently zero precautions for me to worry about!)
HAIR: Anything to know about it coming back? Am I able to shave once hair starts to come back? Is laser hair removal ok?
PERIOD: When does a woman’s cycle typically come back? Is it going to be different in any way? Are there any concerns or things I should be using instead of the usual products?
TRAVEL: Are longer trips possible? Flying? What do I need to consider besides general cleanliness and keeping appointments?
OTHER: When is it ok to get mani/pedi’s, facials, massages, piercings, tattoos? What should I do about being in the sun?